Education and Sickle Cell Disease:

Challenges and Prospects

GSTT September 2008
Funding

 Three-year project
September 2006-
August 2009.
Research Team

 Dr Hala Abuateya, Unit for the Social Study of

Thalassaemia and Sickle Cell, Research Fellow
 Dr Karl Atkin, University of York
 Professor Lorraine Culley, De Montfort University,
Leicester
 Professor Simon Dyson, Unit for the Social Study of
Thalassaemia and Sickle Cell, Project Director
 Dr Sue Dyson, De Montfort University, Leicester
 Dr Jack Demaine, Loughborough University
The Research: Phases 1-2

[1] Review of Secondary Sources

[2] Surveys:
[i] 150 education authorities and policies
[ii] 500 young people under 25 about their
educational experiences
[iii] 200 schools attended by pupils with SCD.
The Research: Phases 3-5

[3] 50 depth, tape-recorded interviews

[4] 8-10 case studies with completion of year-
long diaries and follow-up interviews.
[5] Policy Development Workshops at regional
seminars
Survey of Local Authorities

 February-April 2007
 107 replied from 150
Replies by Local Authority Type

Replied Declined Total Response

Rate
Metropolitan 28 8 36 78%
Borough
County 25 9 34 74%
London 23 10 33 70%
Unitary 31 16 47 66%
Authority
TOTAL 107 43 150 71%
Survey of Local Authorities

 Who to contact in local authority Children’s

and Young Person’s Department
 92 different job titles among the 107 replies.
Responding Officer
Type of Role Reported Total

Special Needs/Inclusion 42
Educational Psychology 7
Medical Needs/Physical Needs 7
Education Officer (Generic/Management Title) 22
Curriculum-Related Role 9
Individual head teacher 1
Nurse/School Nurse 2
Multiple 3
Other 13
Not Stated 1
TOTAL 107
Local Authorities with Policies on..

Total
Asthma 28
Cystic Fibrosis 7
Diabetes 23
Epilepsy 28
Haemophilia 1
Sickle Cell 2
Should have Individual Health Care
Plan (IHCP)

Number

Yes 91

No 6

Depends 2

No Reply 7

TOTAL 107
Should have Individual Health Care
Plan (IHCP)

Number

Yes 91

No 6

Depends 2

No Reply 7

TOTAL 107

Able to State Numbers with IHCP 14

Number of Children with SCD in Local
Authorities, England, 2007
Number of Children Number of Authorities

Not Able to State 92

?
None 5
0
Children with Sickle Cell Disorders..... 1
1
3 1
5 1

7 1

10 1

11 1

20 1

37 1

50 1

250 1

Total Children 394 Total Local Authorities = 107

Number of Children with SCD in Local
Authorities, England, 2007

 Most LAs do not know numbers of children

with SCD under their jurisdiction
 Most do not know numbers with IHCP
despite majority stating that these should be
given to children as a matter of course
 394/5000 = 7.9% children with SCD “visible”
in policy terms within education system
Number of Children Ranking of Authorities
Not Able to State
?
None 90th 125th 129th 133rd 146th
0
Children with Sickle Cell Disorders.. … 100th
1
3 120th

5 122nd

7 69th

10 96th

11 17th

20 26th

37 18th

50 21st

250 11th
Number of Children with SCD in Local
Authorities, England, 2007

 LA ranked 90th an area designated “high

prevalence” by NHS Sickle Cell and
Thalassaemia Screening Programme
 LA ranked 122nd still reported five children
with SCD
 None of the ten local authorities with highest
number of Black (African/Caribbean/Other)
reported numbers
Publication

 Dyson, SM; Abuateya, H; Atkin, K; Culley,

LA; Dyson, SE; and Rowley, DT (2008) Local
authorities and the education of young
people with sickle cell disorders (SCD) in
England International Studies in Sociology of
Education 18 (1): 47-60.
Survey of 500 Young People

 July2007-July 2008
 569 replies
Acknowledgements

 Kings College, North West London (Brent);

Guys and St Thomas’s.
 Sickle Cell Society, Sickle Cell Young Stroke
Survivors, OSCAR (Sandwell, Bristol,
Nottingham, Leicester); Northampton, Milton
Keynes, Luton, Barking, Tower Hamlets
 Hackney PCT, Newham PCT, Birmingham
PCT
Sex of respondents

 288 female (50.6% valid)

 281 male (49.4% valid)
 Age of Respondents

70

60

50
Number
40

30

20

10

0
4 7 10 13 16 19 22 25
Age of Respondent
Black Angolan 21
Black Caribbean 162
Black Congolese 19
Black Ghanaian 62
Black Nigerian 183
Black Sierra Leonean 46
Black Sudanese 6
Black Somali 6
Black Other 46
Asian 5
White English/Scottish/Welsh 3
Others White 3
Total 562
Changing ethnic composition of Black
communities in UK

 African Caribbean: 10% carriers; 0.25% SCD

 African: 25% carriers; 2% SCD
Reported Type of Sickle Cell Disorder

Number Valid Per cent

Hb SS 411 72.9%

Hb SC 81 14.4%

Other 16 2.8%

Not known 56 9.9%

Reported Severity Indicators

Reported Indicator of Severity n Valid

%
Stroke 135 23.7%

Regular Blood Transfusion 146 25.7%

Emergency Blood Transfusion 222 39.0%

Admitted 3x or more per year 203 35.7%

Hydroxyurea 110 19.3%

 Number of Crises Last Year Reponses
None 113 (20%)
1 62 (11%)
2 53 (10%)
3 67 (12%)
4 37 (7%)
5 65 (12%)
6 32 (6%)
7 20 (4%)
8 11 (2%)
9 6 (1%)
10 or more 87 (16%)
Context of Black Children in Education
System
How Our Schools Fail Black Children

 BernardCoard
(1971) How the West
Indian Child is Made
Educationally Sub-
Normal in the British
Educational System
 Black Performance Relative to LEA Average

25
+20 points
20
15
10
Local Average

5 Age 5
0 Age 11
-5 Age 16
-2 points
-10
-15
-20
-21 points
-25

Source: Gillborn, D (2008) Racism and Education London: Routledge p100

 Black Performance Relative to National
Average Age 11 and Age 16

10 +7
+6 +4
-12 -6 -3 -11 -8 -6 -6
0
National Average

-10
Age 16
-20
-14 Age 11
-23 -20 -20 -16
-30
-24
-23
-28
-40
-28
-34
-50

Source: Gillborn, D (2008) Racism and Education London: Routledge p101

School Days Missed per Year
(Sickle cell related)

 Ranged from 0-200 days

 Average (Mean) 16.3 days (sd 25 days)
 Most frequently reported (Mode) 10 days
 15 days: school required to make provision
 63 sessions (half days) or 32 days =
“persistent absence”
 Around 12% > 32 days
School Days Missed per Absence

 0-112 days
 Mean 7.1 days (sd 12 days)
 Most frequently reported (Mode) 2, 3 or 5
days
How Much Caught Up (%)?
Number
180 31% 31%
160
140
120
19%
100
13%
80
60
40 6%
20
0
0% 25% 50% 75% 100%
How much helped to catch up (scale 0 to 100%)
[Mean = helped to catch up about 38%]
Reported Experiences in Schools
Number 57%
350
46%
300
250
36% 34%
200
150
100
50
0
Not Allowed Not Allowed Unsuitable Called Lazy
Toilet Drink Exercise When Tired
Reported Triggers for Pain Crises in
Schools
Number
350
54%
300
43%
250
30%
200
25%
150 21%
100
50
0
Unsuitable Hot/Cold Teacher Pupil Furniture
exercise
Reported reactions when child in pain
Number 75%
450
400 62% 53% 59%
350 47%
300
250 27%
200 20%
150
100
50
0

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Reported subjects covering SCD
Number
140 23%
120
100
80
9% 11%
60
6%
40 3% 3% 4%
2%
20
0 PE

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Contact Details

Professor Simon Dyson

Room 1.27 Hawthorn Building
De Montfort University
Leicester LE1 9BH
(0116) 257 7751
sdyson@dmu.ac.uk
http://www.tascunit.com